Thoughts on being a special needs parent

I’m a special needs parent to three boys with autism and various other medical and mental health issues. I love my kids more than anything in the world. Without a single hesitation, I would die for any one of them.

Despite my undying devotion for my boys, at my core, I’m still human.

The reason I’m writing this is because I want to share my thoughts on being a human, special needs parent.

As humans, we are inherently flawed and far from perfect. We have limitations to our patience, energy, sanity and the overall load we can carry before we begin to buckle.

Despite all these limitations, we are tasked with a tremendous amount of responsibility.

We are charged with the care of very special children. In the case of my family, three very special children. Now, very special is a relative term because it means something different for every family.

Very special childrenis sort of a politically correct way of saying, very challenging children.

Of course they’re special. They’re also amazing, inspiring, loving, loyal, compassionate, brilliant and unique in their own right. That being said, they can also be exhausting, frustrating, violent, destructive, stubborn, sanity assassin’s and just plain challenging.

It’s to be expected that we will get frustrated, exhausted, angry and yes, even resentful at times.

Feeling guilty because we are experiencing these very human emotions is unbelievably common but at the same time, unnecessary.

My personal approach to this is that I choose to embrace these feelings because they are part of who I am and part of the experience. I would even go so far as to say that feeling these emotions is quite normal.

My fear is that if I just bury these feelings and emotions because I feel ashamed or guilty, not only am I denying myself the right to be human, but I also run the risk of these emotions just festering and becoming a cancer of sorts, that will impact my ability to be there for my children, the way they need me to be.

The way I see it, we’re human and doing a job that often requires superhuman abilities. The fact that we get up every morning and manage to keep things moving, especially under these conditions, is nothing short of amazing.

In my opinion, this speaks volumes about not only when you are as a parent, but also a person.

Perhaps the next time you go to beat yourself up for not being perfect, try instead to cut yourself some slack. I mean honestly, look at all you do right in the face of so much challenge.

It’s not always easy to have this perspective but I feel like it’s essential to surviving this often times perilous, albeit rewarding journey through life with our very special children.

Rob Gorski is a husband and father of 3 boys on the autism spectrum. Gorski began his writing career in June of 2010 with his multiple award winning blog Lost and Tired: Confessions of an Autism Dad. His mission is to create dialogue and spread autism awareness in ways that society can relate to and understand. Gorski advocates for special needs families and those on the autism spectrum, both young and old.

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there isn’t a round of applause button so “like” had to do. I don’t think parents of kids with disabilities are given enough encouragement to “be human” as you put it so eloquently. Kudos for standing up for yourself and letting us all share your life the good the bad and the damn hard and heartbreaking.

As a parent of a 21-year-old on the autism spectrum, I can completely identify with what you are saying. Your description of their special needs as a “sanity’s assassin” is right on the mark. Having said that, I also know that I have become a much better person through all of the challenges we have faced. My son’s true heart and the milestones he has accomplished is what makes it all worth it. Parents of typically developing kids may not recognize his accomplishments as a “big deal,” but they are what keeps me getting up every morning.